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Kirk started writing articles for his blog around the time his first book was published (September 2011). Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog. Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world. The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment. Over time, various themes emerged:

Book or writing-related
PD-related information
Clinical research study advocacy/participation
Cognition issues
Living with PD-personal
PD meeting/conference announcements
SPG speaking engagements, media interviews, and webinars
Calls to action
Personal

Three years later, he has posted 120 articles that have been viewed by readers from over 60 countries around the world.
Kirk Hall

Wassup with SPG

 

Just when I thought I was ready to begin to slow down a bit, my plans were derailed. But in a good way.

My involvement with the West Side Tremble Clefs PD singing group is taking center stage right now. We have a major fundraiser this Sunday (November 12) at the United Church in Sun City, AZ. Though my voice is not what it used to be, I am one of a number of folks singing solos. There are 60+ voices in the group in various stages of PD. Some still have outstanding voices. Some have regained or dramatically improved their voices due to participation in the group, which is led and inspired by Sun Joo Lee. I have been communicating with the founder of Tremble Clefs in San Diego, Karen Hesley, about organizational strategies they are pursuing. She has been very helpful and we plan to stay in touch.

The PD palliative care research study I have written about previously has finished the recruiting phase, about half of the participants have been interviewed, and analysis has begun. Linda and I are among the caregivers and PwPs who are participating in the analysis by reviewing transcripts of the interviews and providing feedback. Consistent with the rest of the project, we thought it would be important to provide patient/caregiver feedback. We plan to be involved in the balance of the study which should be finished some time in 2018.

I am once again a blogger partner for the upcoming World Parkinson Congress to be held in Kyoto, Japan in 2019. I spent a good deal of time in Japan when I was working in the consumer electronics industry back in the 80’s and early 90’s.

Linda and I continue to be members of the Parkinson Advocates in Research (PAIR) program which is now part of the new Parkinson Foundation organization. We have both participated extensively in clinical research studies.

We have also both been very involved with the Parkinson Association of the Rockies (PAR). One of the highlights of the year for them is their annual Vitality Walk fundraiser. Linda has been a member of the organizing committee for a number of years and two of our grandchildren participated this year as volunteers. We were honored to take part in the filming of a tribute video along with our two grandchildren. This enabled us to see a side of them we don’t often see.

Don’t get me wrong, we still have plenty of time to enjoy life and live in the moment. Actually, I think our involvement allows us to enjoy our “down time” even more!

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Kirk Hall

I Have a Dream Today

Tremble clefs group 

West Side Tremble Clefs

 

I am going to ask my friends in the PD world for some help today.  But first, some background to provide context.

I have been looking forward to rejoining the Tremble Clefs singing group for people with Parkinson’s (PwPs) in the Sun City, AZ area this fall.  I had the chance to sing with them in early 2012 when I was in Phoenix doing presentations to Phoenix area support groups in conjunction with Medtronic and the Muhammad Ali Parkinson’s Center.  When my wife and I became “snowbirds” in 2016, I started singing with them on a regular basis.  I thought it might help rebuild my singing voice which had pretty much “gone south” over the past few years.  I had no idea how it would impact my life.

I have now been a member of the group for over a year.  It does help both my singing and speaking voice when I am participating on a regular basis.  We practice every Wednesday for two hours at a church in Sun City.  Our leader, Sun Joo Lee, takes us through warm ups that include stretching, vocal, and cognitive exercises.  Then we rehearse songs that we will be singing at upcoming performances at churches, retirement residences, and other venues in the area.

I am somewhat of an introvert, so it took some time for me to become comfortable with the group.  Plus I was self-conscious due to the change in my singing voice.  Gradually, I became less focused on myself and more aware of the people around me and our leader.  The group is made up of as many as 60 individuals, male and female, some with PD and some caregivers. Sun Joo is our director and we have a keyboard accompanist. 

Sun Joo is extraordinarily committed to the group (she works with our group on the west side of Phoenix, another on the east side and one in Scottsdale).  She clearly loves everyone in the group and they love her back in spades!  She shares information about former members of the group and health problems of current members.  She arranges parties for group members and the inevitable funeral plans that come up.  She makes copies of music, plans future events, and so much more.

The PwPs in the group are at various stages of the disease.  Some have minimal symptoms, but many are in advanced stages that include dyskinesia, significant cognitive issues, slowed movement, and balance issues.  There are many symptoms beyond the ones that can be seen.  They are devoted to the group and to each other.  For many of them, Tremble Clefs practices and performances are the high point of their week.

Having seen the positive impact Tremble Clefs has on our group, I can’t help but wish that everyone with PD had a Tremble Clefs group available to them.  That is a longer term goal I am working on, but that is complicated and will take time.

The Phoenix-area Tremble Clefs organization has to rely on donations and self-funding to pay for all expenses, including compensation for the director and accompanist.  Choir members pay a fee to participate and help with fund-raising activities. They create budgets, pay bills, and handle all financial administration.  It is something they are willing to do in order to keep the organization alive.  They would love to have this taken off their plate, but don’t know how to find a solution.

I have worked for corporations and business consulting firms in the past, and have some experience with nonprofit corporate sponsorships.  Most major corporations allocate funds for this purpose.  They look for relationships with organizations that will further their business goals by creating favorable brand recognition and enhance their brand image with their target customer base.

It seems to me that many corporations that provide products or services to the Parkinson community would have interest in supporting something like this, especially in the Phoenix market where there are so many PwPs.  This would include pharmaceutical companies, service providers, DBS companies, product manufacturers and more.  Without going into detail, this involves a relatively low annual expense and a great deal of visibility (advertising, signage, programs, shirts worn by members, events) due to the popularity of Tremble Clefs concerts in the Phoenix area and a positive image that has been created over a period of 10+ years.

I am going to publish this on my blog and share it with my network of PD advocates.  I would not ordinarily turn to social networking to pursue companies who may be interested in considering a sponsorship relationship with Tremble Clefs in Phoenix.  However, I have received many inquiries from these companies through my blog that are interested in having me publish information about their product or services, speak at meetings, provide feedback based on my knowledge of the PD world and more.  So I think there is a good chance that this article will be seen by companies that may have interest.

Any companies or organizations that would like to discuss this matter can contact me through my website at http://shakypawsgrampa.com/index.php/contact-kirk-hall.

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